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@charlottestandage2765
4 ай бұрын
Im so happy for you!!! Im diagnosed with hEDS. Take pictures of your hypermobile joints so that you have it documented, and if you cant do it on the day, you then have proof you could/can do it. Xxxx
@Catlily5
3 ай бұрын
I was going to say take pictures as well!
@Dulcimerist
4 ай бұрын
Your EDS diagnosis would be called a "unifying diagnosis," since it ties multiple health issues together under the EDS umbrella, making them all "secondary to Ehlers Danlos syndrome." I'm so glad that you got things cleared up and figured out! I went through a journey much like yours with my hEDS, but my journey until diagnosis was stretched out until age 37. The first half of my journey was the gaslighting from doctors and getting a fibromyalgia misdiagnosis, and the second half of my journey was feeling the embarrassment of seeking the answers I needed because of those bad experiences with doctors when I was younger. It felt so good to finally be validated and vindicated with the EDS diagnosis! If you didn't have your KZitem channel and your wonderful and supportive community here, do you think you would've learned about EDS and pursued the proper EDS diagnosis? I'm so glad you started your channel here! The ultrasound of your heart (echocardiogram) is a standard screening to check the aorta and valves. I pray and trust that your heart will look healthy with no concerns. You'll also now have a baseline to monitor any changes over time. It's most likely you have hypermobile type, but my gut feeling wonders if you have classical type. A rheumatologist diagnosed me, but opted to not subject me to the expense of genetic testing, since the type of EDS I had really didn't matter since the treatment plan would be the same either way. It was most likely that I had hypermobile type, anyway - the most common and the only one that didn't have a genetic test. That said, it's absolutely imperative to know if someone has the extremely dangerous vascular type, but he was able to rule that out since a surgery I had in the past would've resulted in my death on the operating table if I had vascular type.
@MakenzieMGomez
3 ай бұрын
Ahhhh I’m also convinced I have EDS but only have a fibro diagnosis so far. Thank you for sharing
@briannaa6814
4 ай бұрын
I too just got diagnosed with Hypermobile EDS, MCAS and POTS. I am 47 and have had fatigue since I was 16 (after getting mono). I always thought everyone felt tired all the time and I was just lazy! It’s so validating to know I’m actually suffering from a medical condition. I don’t know what city you live in, but I found Dr. Saperstein in Phoenix (I live in Denver), he is a specialist that has been helping me since January and it’s truly been life changing. I’ve subscribed to follow your journey! ❤
@stmsc8437
4 ай бұрын
I believe you need an echocardiogram. You also should see a rheumatologist that specializes in eds. Perhaps you can get on the cancelation list for the genetic doc.
@user-nv9cc5wh4z
4 ай бұрын
Same. Echo can rule out vascular type and Beighton score done by a competent rheumatologist and mine was confirmed by EDS neurosurgeon. I got a bonus confirmation by genetic testing pre- pregnancy and vascular EDS was on the list and guess what?? It was much cheaper! It’s family testing for family planning and I can’t recall the name. Insurance covered everything. You scream hyper mobile type 3 to me, what I have.
@ruby3200
4 ай бұрын
Yay I’m so glad you got a confirmed diagnosis!!! Your EDS criteria video was so helpful for me. I was thinking that I had EDS and I finally saw a neurologist who did a bunch of neurological tests and reflex tests and he also watched me walk and when we asked him if I had EDS he said yes. I got diagnosed just a few weeks after your criteria video. Before doctors would just ask if I could touch my thumb to my wrist and I couldn’t so they would act like that means I don’t have it, which was annoying since that’s not the only way to test for EDS. The neurologist told me that my neck pain comes from the muscles in my back that are supposed to support my shoulders aren’t working properly. I remember before I got sick when I was a rock climber that I would put my legs really high up by my arms and would climb super loose and struggled with controlling my limbs, my coaches noticed I climbed kind of funny, now I know why! Most of my problems are in my legs. All my joints pop and crack like crazy whenever I walk, it’s very noticeable. I assume that I have hyper mobile EDS. I’m now going to an amazing physical therapist who works with EDS and is helping me with my lymphatic system which will help my EDS and other illnesses. I hope you can see the geneticist a soon as possible! ❤
@Truerealism747
Ай бұрын
What are your other illnesses with heds I have fybromyalgia autism ADHD
@ruby3200
Ай бұрын
@@Truerealism747 I have severe ME/CFS (which is what started and triggered my other illnesses), POTS, hEDS, MCAS, and possibly IBS. I also struggle with Depression and anxiety but am not clinically diagnosed. I’m going to see a therapist next week to figure out my mental health.☺️
@Booksarebetterthanreallife
4 ай бұрын
Aimee I’m so happy for you! And I am right there with you- I finally got an official hEDS diagnosis after many years of wondering why I’ve been so sick. I’ve suspected I had it for years but it’s so validating to have the official label.
@sharongenco3716
4 ай бұрын
Congratulations, Amie, I’m very happy for your peace of mind. Did you ask if they had a cancellation list? If they do, maybe you can possibly get in sooner.
@Aimee_Esther
4 ай бұрын
Yes! I'm on the cancellation list. 😊
@NightPaws_
13 күн бұрын
The way you've learned to advocate for yourself - that's so cool! I've only learned to do that in the past few years, and it's eventually brought me a huge improvement in life quality
@PGH0221
4 ай бұрын
EKG and probably an echocardiogram. Looking for aortic root dilation and mitral valve prolapse. Welcome to the dazzle!
@mlapointej
2 ай бұрын
Congrats fellow Zebra! My family and I just started managing to get diagnosed with EDS a few months ago. We only ran into EDS a bit over a year and a half ago and it has taken some time to get to the right doctors who would check it for us.
@JacksonStar4757
2 ай бұрын
I saw your video on your upper cervical chiropractor now it makes sense this is why you can't hold your adjustment your ligaments are loose from joint instability and that cervical instability is what's most likely responsible for so many of the symptoms you have. I do not have EDS but I have cervical instability causing me a mess of neurological problems from several small injuries to my neck and yrs of bad posture that stretched my ligaments. I started with an upper cervical chiropractor who got me from about 20 to 50% then started prolotherapy at Caring Medical and now am about 70% or 80% on a good day. I know prolotherapy can be very helpful for most EDS patients but sucks it is very expensive tho
@healwithlaurennicole
4 ай бұрын
Aimee!! WOW! Your story is incredible. You're so right, it ALL MAKES SO MUCH SENSE NOW. Im SO happy you have found that missing piece that you KNEW existed all along. It IS so validating and this is a new beginning chapter in your healing journey! (The BEST chapter if you ask me 🥰). You're going to be able to help yourself so much more now that you know for sure what condition you are dealing with and you'll be able to help others even more by sharing what has helped you and what research you have found. Congrats!! So happy for you. ❤
@Aimee_Esther
4 ай бұрын
THANK YOUUUU!!! :D
@user-dj2bk4gg3x
4 ай бұрын
I waited a year and a half to see former genetics dr in sep 2016 . Good luck
@lindseym3810
4 ай бұрын
It seems funny to say congratulations, but those of us in your shoes totally get how huge this is! I teared up listening to you talk about the fear.. validation is everything. I know I have hyper mobile EDS, although I never got the testing to rule other types out. But my issue is, what am I supposed to do other than living with it? Physical therapy has been suggested, I’ve seen others taping/bracing. I’ll be interested in following your journey from here and hopefully take a note or two 🙏🏼🤗
@leschroniquesdanissa
4 ай бұрын
Hi there ! I'm in the same situation as you unfortunately... I've been sick for the past 5 and half years now with the same symptoms as yours. I was quickly diagnostic with fibromyalgia because doctors don't know what I have, until recently a lot of people on social have been telling to get tested for EDS ! I looked it up and I just realized that I've been struggling with a lot of symptoms like bruises, falling, I would sprain my ankles, wrists, knees (I even had 2 knees surgeries). So i think I've been misdiagnosed as well !
@leschroniquesdanissa
4 ай бұрын
And I'm also TERRIFIED to go to a doctor and get tested because I've been mistreated so many times by doctors and I don't want to hear another "it's in your head you do have fibromyalgia" 😢
@Aimee_Esther
4 ай бұрын
Keep me updated on how things go for you! I'm sorry you've been suffering so much..
@leschroniquesdanissa
4 ай бұрын
Will do ! 🫶🏼🫶🏼@@Aimee_Esther
@kimberlyboswell7714
4 ай бұрын
Yay! Validation is so awesome!
@user-bp5qs1zj7o
4 ай бұрын
I’m so happy for you
@kellygirl912
4 ай бұрын
I have a couple of questions for you. The doctor you saw today what type of a physician was he? Do you know if a geneticist tests for everything? Do you usually need a referral? I too have always thought my Fibromyalgia diagnosis was incorrect as well. I don’t know for sure what it is but I would like to find out.
@Aimee_Esther
4 ай бұрын
I saw an internist. I believe you usually need a referral for a geneticist. I'm not sure what that doctor will test for but I'll share when I find out!
@kellygirl912
4 ай бұрын
@@Aimee_Esther thank you for always getting back to me when I have questions, I really appreciate it!
@lindseym3810
4 ай бұрын
* I think he was talking about the vascular type of EDS.. it’s the scariest one that I’ve learned about. Also, fun fact.. scoliosis is common in EDS from what I’ve heard. I remember getting checked in elementary school for that- never had it! Then, I was rear ended 2 years ago (33 years old) and got a neck/back X-ray to make sure I was ok. Guess what they found?! Lumbar scoliosis 😮
@paolagrisales7644
2 ай бұрын
I know that gut issues are closely related to EDS. Is the treatment with Fixbiome still helping you??
@Truerealism747
Ай бұрын
Does that help pain
@street_girl
4 ай бұрын
It's a pitty you can only make the genetic testing next year 😢.
@jamesmcconnell2473
3 ай бұрын
You're hurting yourself mightily Ignoring Tarlov cyst. A trip to a neurologist is the first step.
@shaylakitgiles1710
4 ай бұрын
Is there any way you can show some of your journey appointments ect?
@Aimee_Esther
4 ай бұрын
Like video while I'm in an appointment? Is that what you mean?
@shaylakitgiles1710
4 ай бұрын
No not necessarily in the appointment, but at the place if you are having tests done, just to show what it could be like, a bit like what you showed when you had your Surgeries.
@carolyndann
4 ай бұрын
Would you be able to do a video about the differences, particularly in pain, between EDS and Fibromyalgia?
@Truerealism747
Ай бұрын
@@carolyndannI have heds still diagnosed fybromyalgia heds autism causes central sensitisation which is fybromyalgia highly related to spd
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